New Orleans Saints legend Steve Gleason is opening up about his 15-year journey with amyotrophic lateral sclerosis, his place in the Saints' history books, and how his diagnosis brought him closer to other NFL players.
"Robin, I'm still here. That still surprises some people," Gleason told ABC News' Robin Roberts in an interview that aired Monday on "Good Morning America." "It does not surprise me as much as it used to."
Gleason spoke with ABC News ahead of the Saints' Monday night game against the Atlanta Falcons, which marks the 20th anniversary of the Saints' return to the Superdome following Hurricane Katrina. During Monday's game, Gleason and former Saints teammate Curtis Deloatch will be honored as "Legends of the Game" in recognition of their roles in the Saints' 23-3 victory over the Atlanta Falcons on Sept. 25, 2006, the Saints' first home matchup at the Superdome since 2004, when it was damaged by Katrina.
Gleason was diagnosed with amyotrophic lateral sclerosis, or ALS, in 2011. ALS is a progressive nervous system disease that destroys nerve cells and causes motor function and muscle control loss, according to the National Institute of Neurological Disorders and Stroke.
In people with ALS, the brain eventually "loses its ability to start and control voluntary movements such as walking, talking, chewing and other functions, as well as breathing," the agency states. While there are treatments approved by the U.S. Food and Drug Administration that may extend survival or slow functional decline, there is currently "no known treatment" that can stop or reverse the ALS' progression, according to NINDS.
"I cannot move, talk, or breathe on my own. Some days are brutal," Gleason said, speaking with Roberts. "And still, this is a miraculous, wonderful life. ... I wake up, I watch the sunrise, I am with [my wife] Michel, [kids] Rivers and Gray. I get to love this life and the people in it."
Today, Gleason said he uses his eyes to communicate and write with a special tablet. He also uses eye tape, often decorated by his children, to keep his eyebrows in position to work with his tablet.
"I live on a ventilator," Gleason explained. "I live knowing this breath is given to me by a machine, and this sentence is built letter by letter, and this moment with those I love is the whole point."
Gleason's role in the Saints' historic first home game back at the Superdome 20 years ago has served as a "lifeline" amid his journey with ALS, he said.
Gleason, a former safety for the Saints, cemented his place in team history during the 2006 game when he blocked a punt from Falcons punter Michael Koenen in the first quarter. Deloatch quickly recovered the ball, which had bounced backward into the end zone, giving the Saints their first touchdown of the game. The team has called that blocked punt touchdown "one of the most iconic moments in franchise history."
Gleason said he immediately recognized the impact of that moment and how much it meant for the city of New Orleans, which had been devastated by Katrina and was still rebuilding at the time. Later, however, he also came to realize its impact and importance in his own life, he said.
“If I do not block that punt, I am another former special teams player, a has-been football guy," Gleason said. "When the ALS came I probably fade away quietly and die anonymously."
He continued, "That play made me visible at the exact moment this city needed a symbol. Years later, that visibility became a lifeline."
Gleason said following his 2011 ALS diagnosis, the now-legendary on-field moment brought critical visibility and an elevated profile to Team Gleason, the nonprofit he founded in 2011 to advocate for, support and provide services to people living with ALS.
"The truth I have to live with is this: The same play that helped New Orleans breathe again is a big reason I'm still breathing now," he said.
On Monday night, Gleason will return to the Superdome alongside his family to celebrate that famous moment from 20 years ago.
"When I roll back into that stadium, I will not only be visiting a monument to 2006, I will be walking into a mirror, a place that learned how to rise," Gleason said. "I had to learn the same thing. Twenty years later, I can't wait to be in the room where that love still lives."
Gleason's diagnosis also led him to find strong community with other NFL players diagnosed with the disease, whom he affectionately refers to as his NFL "brothers."
"Chris Johnson is my NFL brother. Tim Shaw, O.J. Brigance, Eric Stevens, Steve Smith, others," Gleason said. "More importantly, they are my fellow humans. When ALS enters your life, it is a tsunami of emotions. I want everyone in their families to know they are not alone."
Gleason said he hasn't let ALS stop his creative endeavors either, which include a new album titled "Rebirth" that features his poetry and various New Orleans musicians.
"It's a love letter to the people and spirit of this wild place," Gleason said of the project. "Who better to bring that to life than the best musicians from right here in New Orleans? When we started reaching out around town, they kept saying yes. Their support has been one of the most meaningful parts of making this album for me."
In addition to Gleason's "Legends of the Game" honor, the Saints will honor Team Gleason during Monday night's game, making it "the beneficiary of the game's 50/50 raffle," the team said.
The NFL has also announced it will be donating $500,000 to research consortium Answer ALS' Champion Insights program, investigating ALS in professional football players, other high-performance athletes and military first responders.